how I ditched CF

U

Undisclosed

Senior Member
Messages
10,157
WillowJ said:
at least we know she isn't looking for community here, so isn't likely to be hurt by our warm reception :) by copying your tactic, I count 7 different boards she posted on.

chronicfatiguetreatments com already took her post down

curezone org has a couple of people taking her seriously--one doesn't have CF, and the other, fledgling, doesn't say what they have... maybe someone with some energy should establish and account there and tell their CFS/ME/CFIDS section the difference between CF and ME/CFIDS so the people with neuro-immune disease have a better idea what's wrong with them. dry fasting is a horrible, horrible suggestion, particularly for people with orthostatic intolerance.

I feel awful now and need to go do something else
Click to expand...

She also posts under the name -- pame'lavik'toria -- counted another 8 boards under this username. I think she is extremely excited about her weight loss and raw food diet OR it could be that every single forum she has posted on has a link to her blog which is rife with weight loss product ads which is a way to make a bit of money. Either way, she may not know the difference between chronic fatigue and ME/CFS.

If it were only that easy, change your diet and be cured -- none of us would be here cause we would all be healthy and happy. Cort would have to start a whole new forum -- Raw Foods Rising.
 
I

insearchof

Senior Member
Messages
598
Mark said:
This bit of spam is on loads of CFS sites.
Click to expand...

Then perhaps it can be removed?

The poster obviously does not appreciate the distinction between ME CFS and ICF and as someone else pointed out, that is not necessarily a patients fault when you consider some doctors do not either.

We often hear recovery stories from those suffering from chronic fatigue and this is just another example.

If it wasn't for the severity of and complications of my illness, I would find it funny that another ignorant person is telling me what I need to do. If the solution was in what was being proposed I would have had my life back years ago.

This post also implies that we are all dim wits....one of the first things we all generally do, ( if we never had it before) is invest in filtered or distiller water and change our diets.

Again it is not the posters fault for the general ignorance, but it is unnecessarily upsetting for the rest of us who have tried these measures and many, many more and are still doing so.

Perhaps there could be a section in the forum for chronic fatigue. Such a section could contain a brief note on the distinction between CF and CFS and ME. Recommendations of this nature (from ppl who are not simply spamming and I do not know if this person is or not, but posting on a no of boards with links to a blog selling weight loss products, might suggest such) could be posted there.
 
Dainty

Dainty

Senior Member
Messages
1,751
Location
Seattle
The poster was a spammer without legitimacy and uninterested in genuine discussion. They have been banned.



Frustrating how this kind of misinformation does us harm...
 
I

insearchof

Senior Member
Messages
598
Thanks Dainty.

Am glad to see people are on top of things here. :victory:

Maybe this thread could be renamed? "How I ditched CF and got ditched from an ME CFS Forum''
 
WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Dainty said:
The poster was a spammer without legitimacy and uninterested in genuine discussion. They have been banned.



Frustrating how this kind of misinformation does us harm...
Click to expand...

good for you, Dainty, thanks

and yes, it's frustrating :(

and really sad for whoever is listening to her on the other board(s). change your diet (though I'm not a fan of all raw, which has a small potential of harm) and use filtered or distilled water is fine to try (though bathing in distilled is a bit extreme, costwise) but dry fasting (no water in addition to no food) could seriously harm someone
 
T

Tulip

Messages
437
That is what is so annoying about some of the definitions for this disease, it confuses ignorant doctors who diagnose a crap diet and no exercise as a disease. And what I don't get is how can people not understand that their crap diet is making them feel like crap..
 
I

insearchof

Senior Member
Messages
598
--------------------------------------------------------------------------------
That is what is so annoying about some of the definitions for this disease, it confuses ignorant doctors who diagnose a crap diet and no exercise as a disease. And what I don't get is how can people not understand that their crap diet is making them feel like crap..
Click to expand...

Its not rocket science is it?

Though, your diet can be quite good and you can still feel like crap if you have ME or CFS, because of nutritional deficencies, inflammatory responses, bacteria imbalances etc due to gut dysbyosis, which can require a little more investigative work as we know.
 
Dainty

Dainty

Senior Member
Messages
1,751
Location
Seattle
Aww, go easy on yourselves, guys. :)

It is far better to accidentally think someone is genuine only to find out they're not than the other way around. We try to take care of things for you so that it's never on your shoulders to figure these things out--this one just went on for a little while before that happened.

So in short, you have nothing to apologize for! :)
 
Mark

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Don't worry about it Esther, this one had me rather confused as well!

I was willing to say that there probably are people out there who've had "chronic fatigue" and recovered with programmes such as this one - a lot of them, perhaps, ignorant and confused about what looks like it's now becoming (in the next layer of the russian doll) something like "CF/CFS/ME". And water-filtration, radical dietary changes, and radical sleep management, are all things to be tried of course, and have been part of helpful programmes for some (myself included).

But this turned out to be, in the final analysis, a more sophisticated spamming structure than I've seen here before, and I could even suggest that at the same time as being spam (because uninterested in genuine engagement with the community here), it also (perhaps) may be a real person who recovered from CF using these techniques and is now beginning to try to pass on that experience and make some money in the process.

Another complex situation...:rolleyes:
 
You must log in or register to reply here.
Back